Speaking at the UK Stroke Assembly in the East Midlands, Speakability Chief Executive, Melanie Derbyshire said: ‘We’re calling for:
(1) recognition of Aphasia as a disability in its own right;
(2) greater public awareness and understanding of Aphasia;
(3) Aphasia training for all health and social care workers;
(4) a full count of the actual number of people who have Aphasia, in every health authority in the UK, on a continuing basis.
She continued: ‘There are estimated to be 250,000 people in the UK with Aphasia. So this is a vital campaign, which will be taken up by Speakability's vibrant national network of Self-Help Groups, and also by the excellent Speech and Language Therapy teams in hospitals right across the country. We are simply appealing to everyone who values their own speech and language skills to add their voice now to our campaign to recognise Aphasia as a disability. Follow us on Twitter @SpeakabilityADA and mark your tweet #recogniseaphasia. And do please watch our wonderful video on YouTube presented by the BBC’s Andrew Marr:
http://www.youtube.com/watch?v=XYXSxNu01gc As part of their campaign this year, Speakability is also challenging you to spend Just One Day In June - Friday 28th June - when you say absolutely nothing… then, as they put it, you will ‘get a sense of what it feels like to be deprived of the vital and humanising gift we call speech’. Just feedback your experiences to @SpeakabilityADA on Twitter, marking your tweets with #experienceaphasia. Why not ask friends, family and colleagues to sponsor you to raise funds for Speakability?
And, if you would like to get more involved, or just learn more, then Speakability is encouraging people to visit www.speakability.org.uk each week throughout June. There, you can find out what is happening near you, or volunteer, or make a donation to Speakability’s vital work providing long-term support for people with this disabling long-term medical condition. It’s a great cause – but it can’t speak for itself!
The Speakability 'Charter for People with Aphasia' can be downloaded here: Speakability Aphasia Charter
Supplementary Information & Notes to Editors
APHASIA
(1) Aphasia (also known as Dysphasia) is a devastating communication disability affecting an estimated 250,000 people in the UK. And more than 20,000 new people acquire Aphasia every year.
(2) Aphasia literally means ‘loss of language’. This can occur to anyone, at any age, following damage to the language centres of the brain. This can be caused by a stroke, head injury, brain tumour or neurological condition e.g. Multiple Sclerosis, Meningitis, Motor Neuron Disease and in the latter stages Alzheimer's Disease. To put it in context, around a third of people who have a stroke will experience some level of Aphasia, so the disability is much more common than is generally known.
(3) People who acquire Aphasia normally become unable to speak – either at all, or to varying degrees. They may also be unable or to read, or to write, or to understand language in the ways they previously enjoyed. They find it difficult to ‘retrieve’ words - although they know exactly what they want to say. "It's like having a jar of sweets but not being able to get the lid off…!"
(4) Aphasia is a distressing and hugely frustrating long-term communication disability. AND YET, many GP's and other health and social care professionals have no training in Aphasia, and lack the appropriate skills and knowledge to support a person with Aphasia.
(5) There is also still no cure for Aphasia and currently no drug treatment to alleviate the effects of Aphasia.
(6) With no drug company seeking to finance awareness (as in the case of incontinence, stroke or Alzheimer's) Speakability’s work to raise awareness of Aphasia and support people with the disability remains underfunded and unable to make the progress desperately needed.
SPEAKABILITY
(7) Speakability was founded as 'Action for Dysphasic Adults (ADA)' in 1979 by Diana Law who, following a stroke, could say only a handful of words. This remarkable woman used all of her communication skills (including the non-verbal!) to challenge the system and the apparent ignorance of the day-to-day challenges facing people with Aphasia. Her anger and frustration at the way she was treated - and the lack of understanding, support and hope for people who had lost their language skills - created the impetus for a charity which ensures that the voices of people with Aphasia and their Carers are still being heard, almost 35 years later. Diana Law's legacy continues today through Speakability's Helpline, Website, Publications, Training and, of course, the UK-wide network of Speakability Self-Help Groups for people with Aphasia.
(8) Speakability was adopted as the charity's working name in 2000. So few people were being properly diagnosed as having Aphasia that the charity sought every possible way to help them find and receive the support they needed.
(9) Speakability runs Speak About Aphasia Month annually, each June, and is enormously grateful for the generous donations from members of the public, and from grant-making trusts and companies and occasionally from statutory bodies which enable it to keep its vital work going.
(10) Speakability welcomes donations large and small at:
http://www.speakability.org.uk/Fundraising
‘Speak About Aphasia Month’ – June 2013
Speakability’s ‘Charter for People with Aphasia’ calls for:
(1) recognition of Aphasia as a disability in its own right– it is not a learning disability, or a mental illness, as it is so often incorrectly assumed to be. In fact, intellect is rarely affected with Aphasia. Speech isn't a ‘sense’ but it is, some people argue, more disabling to be unable to speak than to be unable to see or to hear. Imagine listening to a conversation, by others, about you – you understand what is being said but you have no way of getting your point across or sometimes even validating the fact that you understand! Most people with Aphasia experience this every single day of their lives.
(2) greater public awareness, understanding and no stigma for those who have to live with this cruel and socially isolating long-term communication disability.
(3) Aphasia training for all health and social care workers to ensure that people with Aphasia are treated appropriately in every possible situation. Calls to Speakability's Helpline reveal a horrendous picture of what is happening in the United Kingdom in the 21st century:
people actually being forcibly restrained in hospital because staff don't know how about the disability, or how to help people to communicate their needs;
people being denied benefits because they ‘have no mobility issues’ and therefore ‘must be fit for work…’;
people being placed into care homes because they have been wrongly diagnosed as having dementia - or a learning disability - and have been incorrectly labelled as 'without mental capacity' because those assessing simply do not have any knowledge of Aphasia.
(4) a full count of the number of people who actually have Aphasia in every health authority in the UK, on a continuing basis (at present, exact numbers are estimated and so the true extent of this disability, area-by-area, remains elusive and, as a result, support initiatives are grossly undervalued and inadequately funded, if they are funded at all.)
SUMMARY
1. This is one of the few causes where getting everyone who can ‘speak up’ to actually do so - in this case, to Recognise Aphasia - really can make a difference… to at least a quarter of a million Britons.
2. If you have Aphasia, people often assume you are drunk, or stupid, or both… and every possible relationship you have (or had) can be undermined, as the very ability to speak, which is what makes us human, is so cruelly taken away – sometimes, literally, overnight.
3. The must-watch YouTube video http://www.youtube.com/watch?v=XYXSxNu01gc -superbly presented as ever by the BBC’s Andrew Marr for the aptly-named Speakability - makes this point eloquently and poignantly.
4. Please make a donation to support the charity's work:
http://www.speakability.org.uk/Fundraising
5. Please use your voice to help Speakability raise these issues publicly, clearly, and loudly. Let’s Recognise Aphasia! Follow @SpeakabilityADA and mark your tweets with #recogniseaphasia
6. For more information
about Aphasia and the work of Speakability throughout the UK;
about the SPEAK ABOUT APHASIA MONTH campaign in June 2013;
about how to make a donation…
…please visit Speakability anytime at www.speakability.org.uk
or
…call us between 10am and 4 pm Monday to Friday on 0207 261 9572.
All Media Enquiries:
Melanie Derbyshire
Chief Executive, Speakability
1 Royal Street
London SE1 7LL
Tel. 0207 261 9572
Email: [email protected]
